A Small Syrinx can cause Big Problems: Tell the doctors

Someone on the asap.org message boards started a thread asking people with "small" syrinxes to report their symptoms. I decided to post my response here, along with extra late night rambling.
Many of us struggle with physicians who seem to believe that symptoms correlate strongly with syrinx size, even though there is no supporting research. I say the patient's own senses are a powerful diagnostic tool; listen to your patient.

I have 3-4mm syrinx at widest.. c4-c7 and t4-t12.. No chiari visible on brain mri. (diagnosis 8/2005).

I have gone from being very athletic and active to struggling to walk at times (poor proprioception, weakness in legs)

I have pain in the neck (from c7 up), and a lot of muscle spacticity/tightness long my spine and in my legs. I have headaches with pressure sensation in head and neck. Almost constant throbbing sensation in head and neck. A numb patch in throat comes and goes and I have trouble swallowing sometimes. For a while, I had some annoying frequent urination and leaking sensations. I often have weak/shaky legs, numbness in feet, heels, hands, elbows (comes and goes).

It is *hard* to find a doctor who believes that the syrinx (or its cause) is the root of my symptoms, even though the cervical location is consistent with the numbness in my hands and arms, my first warning symptom. Although I was in tears in pain multiple times last week, my neurologist will only prescribe neurontin and a little flexeril if I beg.. She doesn't seem to believe that my syrinx(s) causes the symptoms I'm reporting. She told me I should see a PCP if I have "tight muscles" because she's a "nerve doctor". This spacticity is messing up my body. I exercise and stretch an hour a day.

No neurologists or PCPs specialize in SM, so finding a doctor who will treat appropriately is trial and error. I don't want to be popping pills, but I don't want to feel like dying either. Surgical treatment of SM without ACM is just starting to show some minimal promise. We need to improve this situation...